The too-unspoken struggle: Constipation and sickle cell disease

Some of my childhood memories still linger. I vividly remember, for instance, the lonely nights spent in my bed while struggling with a painfully distended abdomen, a discomfort extreme enough to take away many nights of sleep. My bed was in the same room as my parents, yet I was usually the only one awake, in pain and unable to shake off the discomfort.

My parents, desperate to ease my distress, would administer pain medication and hematinics for my blood and offer fervent prayers, hoping that I’d eventually find relief. But I wouldn’t feel better until the discomfort became so severe that I’d vomit up the food left in my stomach. That sometimes took two or three days to happen.

After vomiting, I’d feel a sense of peace wash over me. As the discomfort vanished into thin air, the relief was always magical.

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As a child, I didn’t understand what was happening to my body. I didn’t know what constipation or abdominal crisis was, I didn’t know how to deal with it or explain it to my parents, and I didn’t even know I had sickle cell disease. All I knew was that I was in pain, uncomfortable, and helpless till I was able to vomit. It was an episode that happened over and over again during my childhood.

Those early years of my life are hazy, but the memories of my abdominal crises, which were sometimes triggered by constipation and vice versa, are etched in my mind. I recall visiting a family member with my sister and experiencing a sudden and severe abdominal distension after eating. The discomfort was unbearable, and it triggered a full-blown vaso-occlusive crisis.

Witnessing my pain and discomfort all night, our family friends were terrified. They rushed me back to my parents the next morning, and I didn’t recover until I vomited again.

Openly addressing the problem

Constipation, as a factor in sickle cell disease, isn’t talked about enough. It can be a symptom of sickle cell, it can be a complication, and it can trigger sickle cell crises.

As I grew older, I started understanding my body better and how to manage my health. Reflecting on my childhood experiences with my adult medical knowledge, I’ve come to realize that several factors contributed to my constipation. A factor not talked about enough is how abdominal crises can trigger constipation and how constipation can trigger abdominal crises in return.

During an abdominal crisis, the sickling process causes repetitive vaso-occlusion in the abdomen, which affects gut motility and causes constipation. That constipation further triggers an abdominal crisis in a vicious cycle.

Another reason I had so much constipation as a child was because I couldn’t do much physical exercise because of my health. Physical exertion triggers my crises, after all. My daily activities were limited to attending school, reading, and sleeping. This high level of inactivity predisposed me to constipation.

Additionally, another factor that contributed to my constipation was limited fruit and fiber in my diet. Nigerians generally have more carbohydrates in their diet, and I believe I was a victim of this diet, to an extent. I’m also not sure I was taking in adequate water as a child, which must have contributed to my constipation episodes.

Growing older, I had more factors causing me constipation. As I began menstruating (menarche), constipation and bloating became a major part of my premenstrual and menstrual symptoms. Furthermore, I was first prescribed opioids at age 11 by my hematologist, and as they became one of my prescriptions for severe pain, I had more constipation as a side effect.

Managing the constipation

With so many factors contributing to my constipation, I had to find effective ways to manage it through careful observation and deliberate adjustments. I’ve since established a routine that effectively prevents and manages constipation.

My regimen involves monitoring my diet and eating schedule, with some additional changes. Specifically, I prioritize hydration by drinking 3 to 4 liters of water daily, and I focus on consuming high-fiber foods, including fruits and vegetables.

Because of my limited activity level, I restrict my eating to twice a day and avoid late-night meals. Additionally, I resort to prescribed medications when necessary to manage constipation.

For people living with sickle cell disease, constipation can be a significant issue, and it’s essential to acknowledge its impact on the quality of life. I hope researchers will investigate the relationship between constipation and sickle cell disease, especially its interplay with abdominal crises. By understanding this complex relationship, we can develop more effective management strategies to improve the lives of sickle cell patients.

Note: Sickle Cell Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sickle Cell Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to sickle cell disease.